Morning all, I’ve tapered down to 7 mg pred and came off hydroxychloroquine earlier this year. I have been feeling well for about a year and felt that the GCA, PMR and UCTD symptoms were steadily fading away. Until 2 weeks ago. Hit by huge fatigue, muscle ache, stiffness, headache and general malaise. This was coupled with new symptoms of bright red, itchy burning cheeks, itchy scalp, nostrils ears & throat. There are no flakes, bumps, rashes, lesions or redness on my scalp or face, just a sensation of intense itchiness. I’ve tried medicated shampoos, used oils on my scalp, combed my hair with a nit comb and even de-flead myself and the dog! I’m taking antihistamine and ibuprofen to help calm things down and it helps just a little. Nothing physical can be seen. Any ideas?
New symptoms - intense itchiness: Morning all, I’ve... - PMRGCAuk
New symptoms - intense itchiness
As - this was how my own lupus journey started, and the only thing that calms The Big Itch for me is steroids. I was sent to a dermatologist, as there was nothing to see; it was he who biopsied me and diagnosed me (and the only time my ANA has been positive, interestingly). The good news is that a 5-day course of Prednisolone generally works wonders, coupled with Fexofenadine (antihistamine) and one of the better skin creams (not lotion); I use Aveeno or Dermol. The steroids kick in quickly (for me) - I sincerely hope they work for you too.
Thank you for this - yes I think I’ll up the steroids for a while and see if that makes a difference. Good idea about the strong anti histamines - and creams too, I’ll try and get the rosy cheeks under control!
👍 Good luck!
Sorry to interupt, but you write "..and the only time my ANA has been positive, interestingly". Does that mean that you have had blood tests before, that where ANA negative?! It is just that I a disputable, a-typical PMR with lot af other things going on, and dr. have testet severel times in the begining for Lupus, as I was/am rather young for PMR. However I was ANA-negative, and so I did not have Lupus. They also said that the test never or rarely changes, so I have not been checked the past 3 years.
It can change - and you CAN have lupus without a positive result. But the test itself is like the tests for PMR - not specific and it is just part of an overall picture. Autoimmune disease is a mix - finally acknowledged with the labels UCTD and MCTD, undifferentiated and mixed connective tissue disease. With Mixed you have bits of several different a/i disorders and none dominates. It doesn't really matter as they can't be cured and it is a question of identifying what manages symptoms best for you.
Yes indeed - although it's also true that no one ever manages to order blood tests while I am actually flaring, which I'd've thought a no-brainer (partly because I can never get a timely appointment - something I bet we're all too familiar with - and possibly because my GP doesn't want to spent the money on the tests, because apparently they're not cheap!). But at PMRPro so rightly says, diagnosis usually relies on a number of different things. Good luck!
"felt that the GCA, PMR and UCTD symptoms were steadily fading away."
I hear a LOT behind that simple statement. If there were still some symptoms, the underlying disorder was still there in the background and the inflammation has built up enough to be felt.
AND you stopped taking hydroxy a bit back. WHY did you stop it at 7mg pred? Two others on the forum are on HCQ and it is the first thing that has let tangocharlie get to a lower dose of pred and the other has got off pred altogether (sorry, their name escapes me) using HCQ.
There are several on the forum who have had extreme itchiness, I think Kendrew was one, and hopefully they will see your post and respond. Related Posts aren't working which is a shame.
Have any of your medications changed recently? DIfferent manufacturers use different fillers in their tablets - maybe you are reacting to that. A few people found it was possibly an allergy to something that higher doses of pred were managing - or in your case, the HCQ and pred.
PS, this might be interesting
medscape.com/viewarticle/ch...
Had you had a jab recently before it started? Has the GP done bloods - including a full blood count?
No recent jabs, no recent bloods - I do have a routine Rhuemy appt in 4 weeks time - I might get a CBC done via the GP in the meantime to see if that throws up anything. Thanks for the link, will take a read.
Morning Pro, is there a specific blood test that can detect for autoimmune scalp itch conditions?
Not that I know of. It all starts with a detailed clinical examination and then work from there on the basis of any signs.
Thanks Pro - good point about a different manufacturer, the last packet of 1 mg pred was a different make. I’ll make sure the next batch is my usual brand. I stopped taking hydroxy as it was affecting my night vision and on reflection I think I have let the inflammation bucket over fill. I’ll step up to a higher dose of pred and see how I go. Thanks again 😁
Always worth the try.
I get all sorts of allergic type reactions to high histamine foods and some meds which I think are mast cell related but there is no support for diagnosing such disorders on the NHS. It all surfaced many years ago when I came of steroids (it turned out to be temporary and I had to go back on a year later) and at the same time had to take loads of antibiotics long term (another long story of medical failure to diagnose I won't bore you with). I can only have certain brands of Pred, definately not the Northstar brand or the enteric coated ones. The GP has to specify brands on the prescription otherwise it's pot luck you get what you're given. Any meds with Balsam of Peru or red colouring even the ubiquitous E172 are triggers for me
Thanks for replying - I steer clear of histamine foods and use natural products as much as possible, I’m not particularly allergic to anything but I try and keeps potential irritants down to a minimum. I’ve started taking Fexofenadine and upped the pred from 7 mg to 15 mg so I’ll see how that works over the next few days. Bloods came back as normal.
I had betnovate and anti histamine from gp - suggest plain water for hair - sometimes we throw too many things at a problem - I have done that - also don’t know what works if you mix remedies
I’ll try plain water, that’s a good idea!
I have just managed to taper down to zero pred. It’s taken 8 years. About 5 or 6 months ago I had first rheumatologist appt. I was prescribed hydroxychloroquine which made the tapering much easier. I also had intense itching all over. I didn’t have a scalp problem but for everywhere else my gp advised zeroderm it is fantastic. I still take the hcq I would recommend carrying on wi it and the pred until you can taper off the pred.
Thanks - I’ll give zeroderm a go. I’ve been tapering with some bounce backs for the last 4 years - 7 mg is the lowest I’ve ever got to!
Have you been checked for rosacea? Rosy cheeks and itchiness are classic symptoms. It is a kind of skin (hyper-) sensitivity that can appear at any time. Coming off steroids sometimes means our immune systems rebound a little too much. Steroids should not be used on the face, if avoidable, so doctors can prescribe non-steroidal creams, etc.
That’s a good point, I’ll check this out with my GP, thanks for replying
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